Hi ,
My name is Zach and I have been going through recovery from pilon fracture surgery since March 20th 2015. I am here to share my story.
If you have suffered a pilon fracture (also called a tibial plafond fracture) or know someone who has, this can be a site for information exchange on this relatively obscure injury.
A NOTE from Sept 7 2017:
Does anyone want to try moving comments in this blog to a private facebook group? I called it Pilon Fractures Suck
https://www.facebook.com/groups/126072184709967/
Feel free to post and comment. We can commiserate, share, learn or teach others so that we do not feel as isolated and alone (this injury is so rare that it is hard to find anyone to talk to about it.) Click Here to learn more about the injury. Click here to see recent posts I have made.
How it happened to me:
On March 6th 2015 I embarked on what was to be a three day two night backpacking-by-bike (bikepacking) trip in the deep backcountry of the Ishi Wilderness area in Tehama county. Our first day was to be 20 miles to Black Rock campground, where we would camp for the night.
We arrived at Black Rock deep down in Mill Creek Canyon at about 4:30 PM on a Friday evening, and the sun was shining on the water under the Mill creek bridge and made a swim seem so inviting…so I decided to jump in. Long story short, I jumped just a little too far to the left, and landed on a shallow spot and exploded my ankle. It was the most disappointing experience of my life and I began to wish I could turn back time just 1 minute and re-think my move. Before the pain set in I ate a hand full of Advil and over the next 30 minutes I was helped out of the water and to a picnic bench where I laid for 7 hours until we the good folks from Tehama County Search and Rescue (thanks guys!) finally reached us. I made it to the ER at about 3:45 AM and began to learn just what a mess I made of my ankle joint. Thats where I learned the dreaded term “pilon fracture” and I will never forget it. As far as I can tell, 1% of the public has ever even heard the word. Its such a rare injury.
MAYBE A NEW HOPE
http://www.hangerclinic.com/bracing-support/adult-le/Pages/Limb-Salvage-ExoSym.aspx
Where I jumped from (regret sets in every time I see this picture)
April 2015, 1 month after pilon fracture surgery, my friends took me to Monterey CA for the Sea Otter Classic. I was in the wheelchair all day, and pretty sore, but man what a relief to get out of the house like that.
Pilon Fractures Suck! 
Thanks Zach,
This is a great resource for real stories.
Injured on Nov 12. 2016. Fell about 15 feet, landed on both feet, left tibia and fibula shattered above talus. Got 2 plates and 15 screws. Later found out that all the cartilage was destroyed as well.
Without going into all the details of my (continuing) recovery timeline, all I can really say is that it has been a long road with a lot of hard days and nights. Sometimes things progress noticeably over a short time, then sometimes it seems like forever since any improvement. You just never know what the next morning will bring…pain and stiffness, or wow, this feels a little better.
I have a long way to go and just recently took my first few steps without a cane or crutches. (7months after injury).
It’s been inspirational to see how many people have made it through or are making it through the tough mental and physical struggles involved with this type of injury.
I thank all you folks for all for your stories, I have read them many times through the last several months.
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Congratulations on the seven-month mark Chris! Thinking back I was wondering why they put me in a boot right after my surgery. Because I wasn’t allowed to touch my foot to the ground forever, and sleeping in a walking boot and everything seem very strange but regardless at that point at which I was allowed to start putting weight on it and RD become so comfortable with my walking boot 🙂 sometimes I miss it LOL!
The thing is as soon as the doctor said I didn’t need it anymore I took it it and my crutches and destroyed them all…
If I had to do it all over again (oh dear God please no) I would keep the walking boot because it was quite comfortable compared to walking without it 🙂
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Hi Chris how’s your ankle now, did you have a normal life? Chronic pain with pain killers? Othodesis is a chance?
I have a big crushed pilon fracture with complete vanished cartilage…
Thanks
Luis Rodrigues
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I am 3 weeks out from my surgery. They were going to put me in the walking boot -though not allowed to have any weight on it for at least 2 more months. However, the nurse wanted me to flex my foot to her it into the boot. (Surgeon not there that day) I was nervous about that and also not 100% clear that I was to be making such a drastic movement yet. I refused and so they put a hard
cast on me and I go back in two weeks to see the surgeon – and get the boot?! Just wondering how soon you were able/asked to do that?
It is unbelievable that I sustained such an injury like this -I did not fall from a great height. ( I did a round-off, a two footed cartwheel, came down wrong on the side of my shoe on a wooden stage and twisted my ankle ? And fell down. I have 3 plates and 18 pins.
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Hi Lee.
I’m now a year and 4 months from my accident, I walk pretty well, I have pain all days, but ok I’m living pretty normal, I allready work play mountain bike, get my motorcycle ride, and believe me, you must be strong a stay focus in the target: get happy and a pretty normal life… Go forward be strong… Live the day do your best don’t be afraid….
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Zach did your dr ever talk fusing your ankle. I am desperate please email me
Paula
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One doctor suggested it one doctor said to wait as long as possible and another doctor suggested it. My thought is to get my fusion done soon. I just don’t know when I want to go back to non-weight-bearing. I’m enjoying the mobility of that I have for the time being
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Hi Paula,
Your injury sounds almost identical to mine. On 9/5/14 my live changed forever. I shattered my left tibia and fibula above the talus from a fall from a ladder about 9 feet high. 21 screws and 2 plates. The cartilage was destroyed and traumatic arthritis set in pretty quickly. In November of 2016, I decided to have an ankle replacement because the pain was so bad and quality of life was horrible. The surgeon recommended replacement instead of fusion because once you do the fusion, a replacement is no longer an option. A fusion can be done if the replacement fails. Also, my age is 66 and they have had good success with people over 60. I talked to a couple of patients that had 12-15 years with a replacement.
So, I am 8 months from the replacement surgery and things are coming along pretty well. The pain level keeps decreasing to the point I only take aleve once or twice a week.
I can walk about 2 miles, but slowly. I can play golf, water volleyball, dance and swim. No running or jumping though I really don’t care to do that anymore. In the morning it is sore and stiff when I get out of bed for about a 1/2 hour. I still have considerable swelling and some numbness in the foot. My range of motion is pretty good and overall, I feel so much better and I have mobility.
Pilon fractures really do suck, but better days are coming your way.
Also, if you can go to a pool that helps a lot to build up your leg muscles without the full weight on the ankle.
Good luck.
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Thanks for making this blog Zach. I had ORIF surgery in my right ankle for a pilon fracture in NYC about four months ago. I’m in the beginning of my 3rd week walking without the boot or crutches, but it’s hard to walk and my ankle has very limited mobility. I’m really interested to find others who have had my kind of fracture if you’re familiar with the people on this site and can make a referral. I think ours are somewhat different as I don’t seem to need the brace but have been told my recovery will take at least a year. If anyone is in NYC and wants to talk, I’m very interested in sharing this experience with someone.
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IM IN NYC!!! I had my surgery at nyu langone. Please shoot me an email wli8785@gmail.com!!!
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Hey Will good afternoon my name is Ray and I suffered a injury on my right ankle similar to yours on Oct 24th 2018. I suffered a open compound fracture grade 3 pilon fracture. I got ORIF and have 2 plates in my Tibia and another plate on my Fibula and a total of 19 screws. I suffered the fall from about 12ft off a ledge. I had my surgery at Bellevue in NYC. It’s been 4 months since my 2nd surgery and I was allowed to start bearing weight on my leg a week before my 3rd month on a Cam boot. For the last couple of weeks I’ve been wearing comfortable sneakers. My foot is still swollen. The swelling fluctuates but I’m still able to wear my sneaker. I’ve been walking anywhere from half a mile to a mile on nice days with limited use of my cane and at the end of my walk I’m almost hobling back home. My range of motion is still very limited specially when going down stairs. Going up is almost easier than going down. When I go down a step I can’t fully bent the knee And I have a small jump. I’ve been working at home and at physical therapy to improve my limited range of motion which I find is still very limited. I also developed a condition called Oversupination Which means that when I apply body weight on my ankle it bows out as if the Tibia bone isn’t aligned with the ankle. I’m getting shoes or sneaker heel inserts called Othotics to correct the gait on my foot when I walk. Will I appreciate any feed back you can give me on your recovery anc how it’s been and were you able to return to work?
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Does anyone know how I can contact Robert Albert? The guy from NYC? We’re from the same city but I don’t think he’s getting notifications from my reply.
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Yeah I’m not sure either. This whole blog comment string is not my strong suit.
I do believe he put his email in his response so maybe scrolling through will find it.
If any of you know anything about turning this blog into a forum or something easier to read please let me know
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Hi guys, I just replied to Will directly. My email is robertalbert@gmail.com for anyone else in NYC.
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I had a pilon fracture at right ankle 5 months back,and i was undergone operation by ilizarov methid,after 3 months of operation,apparatus was removed and i was given back slab for 21 days,then i walked with the help of a crutch,though now i walk slowly without crutch or any suport but cant Walk for long,there is a sharp pain if i walk for long,and horrible swelling,also there remains stiffness,i cant move my ankle like before,donnow how long it will take to resume my normal life,normal gait
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Hello I was been operated at two months I still walk with crutches, I’m very confident with the recovery, it will be painfull but I’m 40, it’s to soon to give up, come on do your best believe in God, he will help…. But you need to do your part of the road this is a challenge to prove how we are made off… Your body need of relearn how to adapt to new condition, do exercise especially non charge sport to strength your muscles and tendons, I think this is e essential to have less pain.
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I experienced a pilon fracture in September 2018 from a motorcycle accident. My boot comes off 17 January 2019. Since mid December I was instructed to go on an excersize bike 20 min a day and try flexing the ankle till flexibility is similar to my good foot.
The calf muscle is clearly not as big anymore and I don’t believe I will be going to be able to walk unaided after the book comes off. The flexibility of my ankle doesn’t allow me to point my toes. I followed my doctors orders to the T. I was so grateful that “union” was taking place after the appointment in December. I too believe that God goes before me and I don’t have to worry about my future recovery. If I remain in peace and confidence that is the best state of mind for coping with the trauma.
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Work hard. Don’t sit around doing nothing I had a motocross accident 10 months ago. Hurts like hell but keep pushing
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What sort of excersizes do you do? I will start physio after the boot comes off and have heard that may mean more pain to endure.
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Hi I have better than expected recovery 5months from injury to normal life… I started walk about month 3 I have spend time cicling 30 minutes a day, I get work again at 8 November with lots of pain but I’m improving day by day I walk 8 km a day and spend 20inutes cicling at night, I make constrast baths in my foot (real hot water, then freezing water) it feels great and smashes the pain. I’m living without painkillers and I allready ride 60km on mountain bike in real fun single tracks, now I can’t ride on foot in descent I must sit in way to eat all bumps with mi butt and not my foot… I know I will suffer but now I live my life day by day and for me it’s the real value… Thanks god now I know I’m alive because my foot remembers me all day.
Don’t give up be a real hard men… Enjoy life.
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Well said! Ride bikes. And lots of balance exercises also squats seem to help. I’m thinking of getting my hardware out! Does anyone have thoughts on that?
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Thank you Jason. I appreciate those tips. My husband and I have road bikes and since we are not touring anymore on the motorbike the road bikes can fill that void.
We’ve had the motorbike for 5 years and that was the thing we did to get out of Sydney for a day.
Open country roads were about an hour out of Sydney.
It was that hour out and back in which was probably the less enjoyable of the ride with heavy city traffic.
In September we were on a main road doing 70km and were needing to change lanes to the left (we drive on the left hand side of the road in Australia) because we were going onto a motorway up ahead.
My husband was told when getting his motorbike license “ride as if you are invisible”. He took this seriously and was a very careful rider.
As we changed lanes a vehicle a few cars adead slowed down to enter into a property. My husband put on the brakes while still changing lanes and the next thing the bike was on it’s side. I was lying on the road spread across two lanes. (It was only a two lane main road). Looking back I am feeling pretty blessed that no one came along the inside lane and ran over me or I would have had much more damage than a pilon fracture. A passerby who was an educator for first aid was at my side in seconds. Another passerby who was a traffic controller was controlling the traffic within second too. I was surrounded by a pretty amazing support team. My husband went down on his shoulder and hip and has since had neck problems. However on the day he was able to get on the bike and ride it home. As the bike went down my leg was caught under it, twisted and shattered the tibia and fibula. From there on in it was some very effective pain killers and praiseworthy paramedics, nurses and doctors at Westmead Public Hospital. I may still have some hurdles to get over with the recovery from a pilon fracture but I like to let people know that I’m the day I – Eve Pillon was a pillion passenger and only ended up with a pilon fracture.
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Any thoughts on hardware removal?
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How are you now farzia.
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Ha. Yes, I’ll be keeping my boot, crutches, and cane indefinitely. This week i could barely walk without the big boot and a crutch. Last week was far less painful walking, just using light pressure on a cane. I am going to go buy a heel lift today to see if that will help. Sometimes I wonder if changing up some of your foot gear (braces, boot, shoes, inserts) kind of switches things up enough to not get real sore in one area of the ankle. Either way, its worth a shot and having options doesn’t hurt.
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Good luck with everything Chris I really feel like trying a lot of different options helped me find some relief. I started out with really heavy duty hiking boots and like 1 inch heel lift inside them and it was good.!!
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Chris or Zach, when you say you put in heel lifts, do you put them in both shoes or just the fracture side?
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Both
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I just went with one on the bad side, and it was not a true lift like Zach talked about, just a thick gel type heel support, but I don’t really have any calf tightness/shortness where I would need a lot of lift. Everyone is gonna be different. I’m just hoping to maintain some sort of equal leg length, for the benefit of the rest of the joints. Ultimately, we just want some pain relief and mobility. I’ll wear clown shoes if they don’t hurt ! After one day, it feels pretty good and its been a sigh of relief…but I’ve also learned to never consider myself out of the woods just yet…just gotta keep going and adjust as needed.
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Hi,
I am five weeks post op and I should be starting physical therapy next week. When I am sitting I try to place my foot down flat on the floor but I get pain when I try to place my heel on the ground especially when the foot is closer to me. Is that what everyone is experiencing thus the need for a heel in their shoe? Idk if it’s my posterior tibial tendon that’s torn or inflamed from my fall but hopefully PT will help. Just wanna stand and walk without pain.
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My experience is that the pain with this motion is normal in the early stages. My heal lift/cushion comments were related to later stages of recovery…when you start weight bearing/walking. Everything depends on the degree of your injury and some other factors (age, weight, fitness levels, nutrition, blah blah blah) . If you are not weight bearing, just be patient and stick to the stretching and PT exercises…again be patient, its hard, but do it, you will progress.
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Im at two and a half years and the lifts is all that I need to get around now days.
There’s no way I could know what other people’s ankles feel like, Im just sharing the many experiments I’ve tried and what is working for me.
And it’s important if you raise up one heel that the other is raised as well because your legs need to be the same length or your hips are going to suffer.
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I don’t know what other people experience but I cannot dorsiflex enough to get my heel down and need the heel lifts.
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Hi. I am Donna. Polly the pit pulled me off the porch. Dogs can fly! But I can’t. Sigh. Landed face down with both feet on the porch, and my chest on a lawn chair. THANK GOD that chair was there. I looked at my feet, and since I had no pain….I lifted my leg and that’s when the tibia broke through the skin. Oh…then I felt the pain.
Broke the tibia in 3 places. Broke many bones in the ankle. And pulverised some. That was in Aug. 2017.. Today is Feb 12, 18. I had emergency surgery right away. Then a month later, surgery to place the screws and plates. The missing bone did not grow. Sigh.
They have to fuse my ankle, but wait! There’s more! First, surgery for a bone graft!
Six months non weight bearing…so far.
Every time I have surgery, I am hopeful. I think the process is moving along, there is a delay. I would say to those just beginning their journey, be patient. There may be two steps forward, and one step back!
This is the only place where I find others with pilon fractures. The ONLY place where people understand. Most orthopods go their entire career without seeing one. Thanks!
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Donna–I am your twin sister. I had my injury Aug. 10, with immediate ORIF surgery. I twisted my ankle while stepping down one step with the laundry basket. Did not see that I missed the step. Shattered my left ankle and fractured the other. I have been thru a lot of physical therapy. No plantar flexion at all. I am walking unassisted but it just hurts. Cam
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I don’t use it for calf tightness, I have such pain in my joint when I move my ankle and the heel lift reduces the overall movement in the ankle by about 25%
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I suffered a Pilon Fracture at age 51 (10 years ago) and it was truly a life changing event. A former all-around athlete in my younger years, I remained quite active through my middle-aged years until my accident. Following the accident, surgeries and much physical therapy, my activity is pretty much limited to casual riding on my bicycle. I can no longer run or jump; if I’m on my feet for an extended period or after push mowing my lawn, I experience lots of pain and swelling for a few days. Sometimes, for no apparent reason, I suffer excruciating pain that makes it very difficult to walk. I’m debating as to whether I should return for a 10-year follow-up to the doctor to make sure everything is still in place and no complications have occurred; sometimes I wonder due to the pain and swelling that still occurs.
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Thank you for posting. With 10 years under your belt you’ve probably got a lot to share. May I ask, have you looked into ankle fusion or even ankle replacement? Is there any reason you have not gone down those paths?
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These stories are SO scary. Does anyone have a positive story to share where they aren’t experiencing any issues? I’m 25 and I’m in my sixth week post op so obviously I haven’t been bearing weight but hopefully it’ll heal better given I’m young.
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I am so sorry for you I am or was 36 when I got my patch lol it has now been 3 years post op and I can not stand for more than 5 minutes at a time and walking I can not make it half way around the block I have now gone through 4 surgeries 1st was the external fixation 2nd was internal fixation 3rd was a distal ligament button with scar revision and multiple other tendon and ligament releases as well as a ligament release under the big toe the 4th was to remove the remainder of the hardware and more ligament releases scar revision and now am being told I need to go through another 5 procedures with a down time of another 6 weeks or so pending on how I heal, of the 5 procedures 1 is to remove the distal button 2 is a release of the 2nd and third toe that are or have turned into hammer toes 3rd is a joint replacement of the big joint below the big toe, I can not put weight to the left side of my right foot, 4th is more releases of tendons and ligaments 5th being another scar revision, even 3 years later I am still emotional, angry,and so many other things I have always been the monetary support for my family and can no longer due much of anything. I hope your story will not be like mine and best I can say is try to keep everything moving you are younger than myself but this will he with you forever.
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If folks can make a trip to Gig Harbor Washington and try on the exosym device, you might find you don’t need any of that. If you YouTube at least three or four different videos on the product I think you’ll see many people with your symptoms are walking pain free.
I will be there in November getting mine. If you go to “Pilon fractures suck” closed group on Facebook you can also talk to other folks who just received their exosym braces and are completely mobile again.
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Hi Will, I noticed you posted this in July. I am a 62 year old male who was involved in a traffic accident (not at fault) on July 17. I had two surgeries, three plates and 21 screws. I was non weight bearing for three months and started touchdown weight bearing in October. I was walking without assistance in November. There is pain but it is manageable. I just make sure I walk every day to keep the joint moving and make sure I keep rest, sit with my foot raised and ice my ankle in the evenings. In December we spent three days in Disneyland, I did 10 thousand steps per day. I rested on the benches more than usual and iced the ankle every night. But I did not need a wheelchair and continue to make progress. That is my experience, my life has changed some with this injury but you have youth on your side! Full Speed Ahead
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gotta jump in and share.I suffered a pilon fracture to my left ankle,and completely shattered my right ankle on the same night in August of 1988. I was passenger in the back seat of a car when the driver fell asleep at the wheel and drifted off the highway and wrapped the car around a tree. An O.R.I.F. device was installed on the left distal tibia,and removal of the talas bone and all fragments within what was left of the right ankle joint followed. About a year later I underwent a pantalar fusion for the right ankle including bone graph from right hip. I subsequently underwent leg lengthening surgery on the right side to make up for the lost talas bone. I grew my tibia 1 inch. I also had the plate and screws removed from the left distal tibia because it was very uncomfortable. In short I spent 4 years in and out of a wheelchair and underwent 7 surgeries. That was thirty years ago. I lived my life like a force of nature. I followed my heart,moved to Colorado,and pursued a career in house framing. I took up hobbies such as rock climbing,mountaineering,and dirt bike riding. I spent my weekends scaling shear walls on North Table Mesa in Golden,and Eldorado Springs,just outside of Boulder. Also,Colorado has 52 peaks that are over 14,000 feet and I have reached the summit of over half of them! In addition I have ridden my dirt bike throughout the vast back country of Colorado and Utah,over high mountain passes and thru the desert canyons. I never let my injuries define me,and I pushed my body to it’s limits. I have lived with the pain, especially in the left ankle where the pilon fracture occurred. I saw a Dr. in Va.,in 2006 due to the pain in my left ankle,who wanted to fuse the joint. Bilateral ankle arthrodesis is not recommended,nor something I would consider. I have had a left ankle debridement surgery in 2010 due to the severity of the pain from bone spurs. I am at the point in my life now where I need ambulatory aids,mostly a cane. I suffer chronic pain in the left ankle some days severe some days not so severe. I have multiple problems stemming from the right ankle fusion due to the algorithm in my gait. My body natural kinetic chain has been severely disrupted due to the fusion of the right ankle. I don’t care to list the problems I have due to the right ankle fusion. I will just say there are many. A total ankle replacement has been recommended for the left ankle but I am holding out. I ride a motorcycle daily and I am not so sure I would be able to shift gears with a T.A.R.,and if the ankle replacement fails, then my only option is an arthrodesis, I can say with almost certainty that my riding days would be over if I fuse the left ankle. Not sure if this info helps anybody but I can say that I have lived a full adventurous life despite the injuries,despite the pain,and despite the limitations. If you set your mind to it ,then I believe you can do it. There is more to my story but I am trying to be succinct as possible. Best of luck to everybody,dont loose hope, and don’t give up….ever!!……here’s my e-mail if anybody wants to contact me – 2819moylan@gmail.com
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Hello .
Nice story how you manage pain, use of brace? Painkillers? Or take the maximum suffer?
I’m with a pilon fracture in my right ankle, I’m a little concern about back to mountain biking and motorcicling time will heal my afraid.
I’m Portuguese my name’s Luis thanks for your testimony.
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I asked those questions ten years ago. Ankle fusion did not appear to be an option that I would entertain at the time; ankle joint replacement was basically in its infancy stages and my doctor thought that I was too young to consider that option (he said if I was 75 years old and only walked to the mailbox to get the mail on a daily basis, he’d consider it). I’m sure terrific advancements have been made in the last 10 years but the demand for ankle joint replacements probably does not warrant the attention as would knee or hip replacements. I’ve basically learned to live with my handicapped condition, but it seems like my pain levels have increased as have their frequency of occurrence over the past year; hence, why I’m considering a 10-year follow-up.
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When I had my accident, my wife took me to the ER in a hospital closest to our hometown; that particular hospital did not employ any orthopedic surgeons. The ER sent the x-ray pictures to an orthopedic group in a larger college town and my injury was so severe that those physicians refused to address my injury; instead, they recommended that I be transferred to a hospital in a major city in order to receive adequate care. Following a 3-hour ambulance ride, I arrived at the trauma center of a major hospital around midnight; about 2:00 a.m., they performed a procedure in the ER to get my bones separated to ease the horrific pain I was experiencing. The next afternoon, I was taken into surgery to apply an external fixator that I had for approximately 2 weeks to allow the swelling to subside before a return to the hospital for another surgery to install the titanium plate and multiple screws. A crazy period during those 2 weeks, according to my wife; I was so zoned out on pain meds that I recall very little of what occurred during those 2 weeks.
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Jr.
I’d go for the 10 year follow-up if I were you. If you’ve got bone on bone or a degenerative condition (I’m guessing), it’s bound to get worse. At the very least, your doctor or their referral to another doctor/specialist might be able to let you know what options you have these days. And these procedures are better than just 10 years ago. Good Luck
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Sounds familiar. I fell at work in 2013. Pilon fracture on both ankles. Had the hardware on my left ankle till swelling went down some.
How has your recovery gone? I’m at the point now that I’m considering amputation on the left leg just above the ankle. Dr seems to think this would be a good option. I’m 42 and the pain has only continued to get worse as time goes on. My pain level was at its least at about a yr into recovery.
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Hi whit! Thanks for posting!
I and many others have been there! check out the exosym device (Google and YouTube) and the Facebook closed group called “pilon fractures suck”
There’s hope!
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On Septemeber 5, 2014 I was in a Head on collision @ 70 mph on highway, other occupants didn’t survive, my Pilon Union didn’t complete until June 2015, after that I could not bear weight ever, lost my job because I could not do what I was hired to do ever again, I was an athlete from age 14 till that day and I was turning 47 in less than 30 days. At 46 I could do anything, was still capable of a 6 min mile, now turning 50 this year, I’ve had the ankle fusion, and while using a Arizona AFO brace for every step, I still have swelling bruising and severe pain on the bad days, I have lost 60% of the muscle in my calf, and looks like a young boys leg now, , I take gabbapinton 2400 mg a day, which helps a lot, but it makes you sleepy. I also lost disability pay after a year and finally got on SSDI, but it was a battle. I also suffered knee, wrist, shoulder injury, so now after 3 years I’m still waiting for a settlement from the other side to recoupe my financial and physical loss, and am considering amputation, just to regain some mobility. I’m not looking for sympathy, as most of you suffer just like me, just wanted to give more info from different perspective.
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Hi Larry thank you very much for posting here. You definitely got one of the roughest stories around.
I think what you’re saying is going to be very helpful to some other people who need to be able to relate.
What are your thoughts on the exosym? Based on all of the videos and testimonials it seems like it should be a perfect fit.
Check out our Facebook closed group for a bunch of ongoing dialogue with”pilonians” like us!
Just search for “Pilon fracture suck” on Facebook and you’ll find our closed group!
I think there’s a bunch of inspiration on that page right now that could really give you some hope!
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Will do.
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Hi Larry,
I totally understand your painful situation and hope you can get some relief from this terrible injury. I also suffered a pilon fracture on 9/5/14 getting off my roof (21screws and two plates). After 2years of going through absolute hell, I opted for an ankle replacement since I was 66 at that time and based on what the surgeon told me. I am into this replacement 11 months and I have a somewhat functional ankle. Numbness and swelling are still there along with a pain level of 2-3 when walking. My left calf is back to about 3/4 instead of a 1/2 size of my other leg. I can’t take any non steroidal meds because of my heart condition. I am trying to stay off the heavy duty pain killers and just take some long acting tylenol, but some days are worse than others. These pilon fractures really do suck the big one and our lives have been changed forever and ever.
Good luck on your journey.
Tom B.
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I saw your story earlier in the comments, was commenting to my wife about you, they said I was to young for replacement, but after gaining 30lbs, I cant wait for something to change, I’ve always been freaky active ran 5 mile before going to work,then worked 12 hours in a labor intense job, freaky. Now I sleep and hobble around, only get 5 hrs sleep a night, pilonzac said something about exosym, checked it out, looks awesome but since I’ve had the fusion…… And with no funds and being on Medicare, I still have to wait for a settlement. Good luck with your journey, look into gabbapinton, it’s non narcotic and works better with some meds, it’s way better than Tylenol.
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Larry thank you for sharing your experience! There are so many folks curious about ankle replacement and the conversation is also happening on our closed Facebook group. If you haven’t joined already, would you be willing to share about your experience and headspace to those folks too? It can be found on Facebook by searching Pilon Fractures Suck in the search bar.
Have you looked at the Exosym?
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Hi. My 10 year anniversary will be this February. Your post could have been mine. However, since joining this blog in September I learned about the Exosym brace . I am going to Seattle in November to get fitted. Please look into it. I’m expecting to be able to actually participate in life again!!!
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Hey Tina! I’m going to be there for the first week of November when will you be there?
Mike from this group is also going to be there in early November I believe I’m going to overlap his stay. It’s all pretty cool!
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Will,
Like you said, your youth is definitely a positive. (Mine happened at 44) Do yourself a favor-No nicotine or alcohol, eat as best you can (lots of info for proper nutrition for healing bones online) , and do your therapy, religiously. But like everyone, a lot depends on how bad your injury is. Right now you are working towards giving yourself the best recovery possible. You’ve got a long life ahead, so give it your best effort!
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I am sharing an update on my status. Finally from Pilon fracture I have now moved on to ankle fusion ( Am I officially the first one to progress from Pilon fracture to fusion in this forum ? hahaha). Sometimes I just feel it is good to see some humor in the face of tragedy, just tried and fed up of been constantly upset since the last 8 months.
I got operated on 14th July, 2017 and got discharged yesterday. This time I was operated by an ankle specialist so he told me surgery went fine. I am just hoping for the best that the bones fuse in 6 weeks and I am able to get back on my feet. In addition to ankle fusion I also did Achilles tendon lengthening because after my first surgery my muscles had contracted. Fusion was a hard decision but that was the only choice left because there were high chances of failure in reconstruction and I didn’t want to be operated again and again.
I also remember someone writing in the forum, someone really young not to rule out ankle fusion after the numerous reconstruction failures she had . But all is not grim I think some people have very good success rates of reconstruction surgeries.
Although, I have watched a lot of people who had done fusion in youtube but I don’t know how I would feel and how my mobility be after I am finally able to put my foot down because right now I am on non weight bearing. I am very anxious because this is a life altering process and I am never going to be able to run again.
However, this injury has definitely been very transformative in helping me being more patient towards life and primarily the big lesson to slow down. Half of our lifetimes we spend either thinking about the past which we can’t change or either worrying about the future which is not in our hands. So, I am trying my best to be there in the present moment and take one day at a time.
The hospital I was treated besides orthopaedics they also specialized in spinal injury treatments. When I witnessed patients with spinal injury I realized life could have been worse. I was so grateful for my life and many things that I had taken it for granted till date. When you sit in the stillness of meditation and listen to the inner voice there are many things you realize that you can find joy in living your life even amidst a tragedy. Happiness I learned during this injury is not something that I would not gain through the external environment by indulging myself in end numerous activities, to distract myself but it is rather a choice that I need to make it everyday for myself. Happiness is also never dependent on anybody unlike the way we always want someone else to make us feel better when all along it was within us to make us happy.It adds more agony to the situation when you let your mind go wild when your health is down. So it good to keep a watch on your mental state too while we take care of the health situation.
I will have to wait and watch how the recovery progresses so fingers crossed.
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My fingers are crossed too Iaishram!
Thank you for bringing your experience to this forum. I’m eager to get ankle Fusion but not eager for surgery.
My surgeon tried to talk me out of ankle Fusion but she does not live in my world. And after the surgery she’ll probably never see me again.
She told me it’s going to be hard on the rest of my foot but I’ve got good years of my life just sitting here living in fear of future arthritis. I’ve got arthritis today. If I go all these years living with arthritis in the ankle to only avoid arthritis in the toes, which is worse?
I look forward to your update when the bones heal!
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Thanks Zack for taking out time again to share your thoughts. I do agree we can’t fall into the trap of the constant fear of what would happen in next 10 -20 years? Thinking how soon arthritis would hit in after fusion. Even I thought a lot about it and then my surgeon consulted me very well that although arthritis might hit in down the line but what’s more important right now is to get you back on your feet and to get you walking pain free. He also told me a case of a guy in his neighbourhood who did his fusion at a pretty young age who is now 70 years old and he regularly takes his morning walks in the park (no complications/arthritis issue as such).
I also read in a study that chances of arthritis and complications is 5- 10 %. Yes, definitely high impact level activities will need to be avoided so that you don’t strain the other ligaments. Right now I am just eager to start walking pain free without my crutches.
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Thanks for the update!! I was the one with many failed re-construction surgeries… my fusion is in a just over a month. It became a no-brainer when I hit 18 months and still living a very altered life. I cannot wait for the fusion! And to start finally moving on with me life!!
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What made you decide to get ankle fusion? What exactly do you mean when you say this injury has changed your life?
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Long story short, at 25 years old and having had 7 surgeries the past 18 months, it’s really my only option right now to walk somewhat normal and be in way less pain. I have severe arthritis from the trauma, shortened Achilles, and very poor range of motion. We’ve done surgeries to address Achilles and range, both of which ended up not working. I’ve been in physical therapy for so long. All the doctor appointments. I feel like so much of my life revolves around my injury. Still today, I am not living anywhere near to same life I lived prior to my accident. While I’m not able to do the active stuff I did prior (and am not expecting to fully 100% return to my active life), I would like more of my normal daily routine to return. For example, I say no to going anywhere that I know I’ll have to walk more than a very small distance due to the severe pain I get. I want more independence to be regained and I want to move on from what’s consumed so much of my life!
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Thanks for sharing. I’m 7 weeks post op and the pain is barely there but I’m afraid when I start putting weight on it and walking it’ll be intolerable. I really hope I’m done with surgeries unless it’s to remove the hardware. Im trying not to let this affect my life long term even though it may be too early to tell. To be honest I’d be happy with walking without any pain.
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I can relate to where that thought comes from Will
I really try not to Future trip and I just try to look at the moment I’m in and the moment tomorrow. This isn’t some mumbo jumbo philosophy. This is just me trying not to give my ankle issue too much real estate in my brain. Maybe call it denial :-). Sometimes denial isn’t such a bad thing.
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I had infections after my third (supposed to be final) surgery, which led to the rest of issues that’s I’m dealing with now. I ended up not using it for about 6-7 months, so definitely not a typical case. I can tell you the first time I was allowed to walk again, I was shocked by how much it did NOT hurt. Definitely a little bit, but way better than I imagined 🙂 it wasn’t until after some of the other 4 surgeries that I started to have more and more pain. Fusion was not on my radar until after these other surgeries. Best advice is to keep it moving (obviously based on what the doctors tell you) and keep muscle strength in both legs as much as possible so you don’t start compensating. There are a lot of non-weight baring exercises you can google… do them! It’ll make recovery easier in the long run! I’ll be thinking about you… best wishes with recovery!!!
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I have a pilon fracture which i endured on 12/24/2016 and im still on crutches and tryna recover this injury is very serious.painful and very stressful.
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Hi Laura,
I am glad that you are looking forward to your fusion. When I read your experience which you shared and the numerous surgeries you had undergone, I really thought you are a woman of steel. But It actually got me thinking after you posted your comments on not to rule out considering fusion. So thanks for sharing your experience it really helped me take my decision after I considered all the odds.
Actually doctors were also offering me option for reconstruction surgery but they did also warn me that there are high chances of failure. My first surgery has left my foot almost deformed and I was walking on my forefoot with crutches for 8 months doing rehabilitation hoping it would get back in place which it actually never did. So doctors told me that they can do my surgery step wise if I wanted first lengthen my Achilles tendon and the foot would be back on place I can walk flat foot but they also mentioned that they cant assure in such a surgery that there would be no pain once I start walking. There was almost no cartilage left in my ankle and when you walk bones rubbing on bones it would definitely hurt.
So I wanted to complete the surgery on one go instead of step wise procedure and get on with my life and opted for Achilles tendon lengthening + ankle fusion which would allow me to place my foot flat and walk without pain .
I think I never shared how I got the injury in the first place. I did not share because I felt stupid and couldn’t forgive myself for long. I was running late for work and I had joined a new office and it was really important for me to be on time. I was hired in a German government firm and we Indian’s have a bad reputation of not reaching on time . I was hell bent that I didn’t want to be tagged as another Indian who doesn’t respect time and I was determined to reach on time .
The best part was that the night before my sister took my house keys and left it outside under the doormat and forgot to get it in. My flat mate left early and locked the door from outside, thinking I have the keys. It was my second day at work I panicked and I thought I will take a short cut from one balcony to other because the flats are constructed very close by in Delhi. I thought the height is low and I would make it, I threw my handbag and I jumped from a higher balcony to other lower one. Instantly when I landed I knew my ankle was broken. Yet, even when I was taken to the hospital I kept thinking it is just a fracture they will fix it and put some plaster and I would be out in 2 weeks (This were the thoughts running in my head while I was also yelling in excruciating pain). However, when the doctors took the x-ray they told me that my bones in the ankle have been shattered like egg shells and that’s the first time I heard I have pilon fracture and I need to be operated. That was October 2016 and since then life has been mostly about visiting doctors. I still keep thinking what was I exactly thinking that I made that stupid jump? I am so embarrassed thinking of how stupid I could be that till date I haven’t told my office that I jumped from a balcony, I simply told them I had slipped and fallen down from the stairs . Probably I was thinking I am spider woman attempting that stupid Jump !!!!
I think more than the physical pain after the injury I had fallen into a spiral of depression. But after the second surgery I am now in a lot more better place mentally. So far things seem to be good, I went for my first review last weekend. The second surgery has straighten up my leg . Pain is considerable manageable at the moment so in a week’s time before I resume work from home I am mostly enjoying my leisure time. Thankfully my workplace has been very supportive and I have managed to keep my job. After the injury I have learned to slow down and not be a work alcoholic which I have been my entire life.
I think it’s a good suggestion to try out some non weight bearing exercise. During my first surgery I hadn’t done any exercise while my foot was left in cast for very long time and my Achilles tendon muscle contracted in the process. My foot was swollen up so badly after the fall and the first surgery left me with such excruciating pains for months that even simple exercise like ankle pumps would hurt like hell. But this time there is no swelling so until the bones fuse in 6 weeks time doing some exercise is definitely going to help. But I am also still anxious once the bones fuse and I put my foot down and start bearing weight what’s the pain going to be like? But it is always best to take it one day at a time and will see at that point how things go hopefully it would be alright.
I hope and pray that you recover soon and that your fusion surgery goes well and you are back on your feet. Wish you luck !
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Hi Iaishram,
I’d like to share my story of how I got this injury as t is quite similar to yours. I was in Japan traveling alone for vacation and wanted to visit the Tsukiji fish market which opens at 5am. I wanted to catch the earliest train at 4:30am so at 4:00am I left my hotel to head to the train station. There was a tunnel that lead to the station but for some reason it was closed and wouldn’t open til 6am. There were no other paths so I decided to climb the gate which was about ten feet tall. When I reached the top the gate felt extremely unstable and wobbly so instead of climbing back down I jumped off and all of the force landed on my right foot. I was in shock and didn’t feel pain at first. For two hours even with people passing by and seeing me on the ground I laid ok the floor thinking my life was going to end. Then finally at 6am several officers came to open the gate and called the ambulance for me. I’ll never forget the excruciating pain I felt when I was carried into thag ambulance. I had to get surgery two days later and missed my flight back to the states. I am now seven weeks post op and have about five more weeks until my next appointment to see if the bones have heard so that I can bear weight. I have three plates and thirteen screws in my tibia. So far pain since thag day has been very manageable. I’m just afraid it’ll hurt again once I start bearing weight and attempt to walk again. However I have decided not to let this affect my life mentally no matter how physically difficult it is not to do so. I haven’t started PT yet but have been doing my own at home since surgery since I was never given a cast. My doctor said it’s important to get ROM back ASAP so he just gave me a boot after my ORIF surgery.
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A “gate jumper” just like me. The gate I jumped off of the top of was only 6′ tall but same result; landed with all my weight on my left leg and the ground, although a dirt/grass surface, was hard as concrete due to extended dry weather. That was 10 years ago. After reading some of the experiences of others on this blog, I’m starting to feel fortunate that my injury turned out like it did. Yes, I have daily pain and swelling and many of my prior activities have been curtailed or eliminated, I can walk fairly normally. Some days, particularly when weather patterns are changing, the pain is more intense and I revert to a very noticeable limp; or after being on my feet for an extended period, same result. But, even with those daily symptoms, I’ve not considered additional surgery, yet. I’m nearly 62 years old and will wait till I’m retired to consider any additional options. Again, after reading many of y’all’s experiences, I feel fortunate!!
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It’s really nice to have you share your long-term experience! Many of us are very much at the beginning of this situation. Its a little scary not knowing what is in store for me 10 years out…but you give me optimisim Jr
Thanks!
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Hey Will,
Thanks for sharing your experience. Guess like I am not the only one and you had your spider man moment, jumping from a ten feet high gate. Even I had fallen with full force and landed on my right foot and smashed my right ankle.
It is really good to learn that you are 7 weeks post OP and the pain is manageable. I am sure you are definitely going to be fine soon. All injuries are different so maybe you might not get any pain once you start weight bearing. The best road to recovery is pretty true which has been commented above to stay away from nicotine and alcohol, to ensure that the bones heal faster.
Besides, it is wonderful that you are not letting the injury affect you mentally. In such kind of prolonged injury, I was not even able to have the pleasure of a simple walk for a short distance. I almost felt my mind robbed me of my own sanity. In India its maddening when you are injured the pavements aren’t at all friendly for anyone with any physical injury and I was mostly confined at home. Also in my first surgery I had external fixtures in my leg with the rods poking out it was almost impossible to move around. I felt nothing less then a prisoner at one point until I had started going to work for a while with my crutches and saw the world just through my cab. There were only few places where I could actually step out. So, you keeping a check on your mental health is definitely half the battle already won, don’t let it affect you at all.
Now with my second surgery I am again on bed rest and waiting anxiously for my bones to fuse soon. I send you my prayers and good wishes for your complete and speedy recovery. Hope that you get back on your feet soon.
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I too had the Spider-Man complex and just climbed all over everything jumping always. Mine was only 5 feet… but I had literally done the exact same jump like a month earlier, but I landed on both feet and didn’t hurt myself. I’m able to walk now and it’s very hard to not continue to climb things : /
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Hi again everyone! I just wanted to give an update on my progress! Surgery on April 14, able to PWB on June 28 and was given the go ahead to FWB July 26! From what I’ve been reading on the internet that sounds like a pretty fast recovery for a pilon fracture. When I got home from the doctor yesterday after being told I could FWB I was so happy, I tried taking a few steps with the walking shoe/brace he gave me but it was extremely difficult and could only take baby steps, and when I say baby steps I literally mean only an inch or two. Its very painful and also I’m having a hard time trusting that ankle again.
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My foot turned purple every time i stood up for like 2 weeks and id have to lay and raise it to get it to drain..that and my foot tingled (not like it was asleep) because it had grown so weak.
It felt strong and less bloated after a few weeks. Then i walked all over the place in my boot. I even helped my moving company with boxes. Probably not the best thing to do but I can’t undo what i have done. Lol
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I’m 8 weeks post op and I have four more weeks until my next follow up which my doctor says I should expect to bear weight once the bones are healed. I’m wondering if I can go earlier since I do not feel much pain at the moment even when I’m sitting and putting my foot on the ground. I’ve been going to the gym to do upper body workouts and I’m usually sitting either on the floor or the bench and I try to put my heel on the ground rather than my foot so that I’m not putting weight on my ankle as I’m lifting. Swelling has gone down dramatically I can barely tell my two ankles apart. So far recovery has been great but I won’t know until my next X-ray and when I start bearing weight again. Fingers crossed it’ll go smoothly!
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For this forum, it’s a quick recovery but I’ve found a ton of young people on Instagram who have positive stories, are years out from surgery and walk and do things normally (and had faster recovery time lines than what’s typical for this forum). My recovery had a similar time line.
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Thanks Hannah. how do we find pilon people on Instagram? I don’t use that app very much. Is it a simple search?
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Hanna and I actually found each other on instagram. You just hit the search tab and look up “pilonfracture” in tags and you’ll see the results. You can also look up “brokenankle” or “brokenleg” which I’ve found more results since some people do not even know they have a pilon fracture.
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Okay sounds good. I wonder how they get through orthopedic surgeon without being told the name of their fracture.
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I also had a purple foot for about 2 weeks. It would go away after awhile. Doc said that’s Normal as the circulation repairs itself.
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Hi Zach and all you other people who post your helpful comments on here I’ve not posted for a while but I’ve had my X fix removed 11 days ago now which was on for nearly 6 months damn it’s good to get that off really is now I have an air boot to wear and my foot and ankle swells up and is a bit uncomftable after wearing it and where my ankle was locked with the pins there is only a tiny bit of movement in my ankle and my toes now can bend a bit more now the X fix is off I can get across the kitchen and get down the hallway now without crutches but it’s not exactly walking it’s more like hop/walking but I’m sure it will get better with physio where I’ve been in the X fix it feels like my ankle and toes are never going to move the same again can any one tell me they have had the same experience as this plz coz it’s really getting me down at the moment and due to the stress of all this me and my partner are going through a break up we have four children and have been together for 19 years in a really bad place at the moment and I hoping it will get better just can’t see that far ahead at the moment cheers guys 😞😞😔😔
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Oh f***! Talk about a shitty situation getting worse. Im sorry Matthew.
It’s great news that you’re making progress finally with your ankle. Having that external fixator so long is mind boggling. I appreciate your update. Please keep sharing about how the progress goes.
And I’m hopeful something good turns around with your family.
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Matthew give yourself a pat on your back for having kept the external fixators for 6 months. I had it for 6 weeks and the external fixators nearly drove me crazy. Merely looking at it made me so depressed, it looked horrifying. 6 months is amazing, I know how hard it is to move around with those rods and the pain is so excruciating. Even my toes were not moving much initially after I took it off. The movement slowly came back after physiotherapy, I guess muscles get wasted and contracted when not in use. But I had other complications and had to undergo another surgery, I am now almost 4 weeks post surgery. I am waiting for my cast to be removed and put in a boot.
When I had my first surgery and was with the external fixtures, I was so irritable that anything could blow off my fuse. I felt no one could tolerate me anymore. So, do watch out on what you can do to calm your mind and get through this stressful phase of life. Everything is impermanent in life so, I am sure you will get out of this tough times soon.
Here is a very nice book that I read to keep myself together. I did like to share it with you.
Becoming Your Own Therapist
http://www.lamayeshe.com/shop/becoming-your-own-therapist-make-your-mind-ocean
It is available in both free PDF download and Audio. Its been said that things that you create in your mind can completely influence the external environment. So with your physical healing try to also heal your mind too.
Hope you get better soon.
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Hey, just found the forum, thanks for getting this set up! I am 20yrs old, and am a avid athlete. I got my pilon fracture last may(2016), after getting dropped by my belayer(rock climbing) from 100ft, breaking my left foot, right wrist, right elbow(shattered), and shattering right ankle(the pilon). Was in bed bound for a month, in a wheelchair for 3mo, on crutches for 2mo, and walked with a cane for 6weeks or so. Now ~15months post op, I am back to mt biking for a couple hours a day, can walk up to 6 miles before I start limping, and crazy enough, back rock climbing again! I still have very limited ROM in my ankle, and getting a annoying pinching feeling along the front edge of my ankle if I do to much, but with some rest and ice I can get back at it. I highly recommend looking in to MAT(muscle activation technique) instead of going to see a PT. I was having little to no improvement after 3months with the stretching regime that my PT assigned to me. After 1 month of MAT I went from limping around the house to being able to walk up hill with no pain. I am thinking about getting the two biggest plates off my tibia(I have 5 plates and 45 screws in my leg) because they hurt with high power movement(hopping, jogging). The best advise it to keep pushing yourself everyday, and don’t think accept “good enough” function, really strive to get your ankle back to it’s previous state!
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Thanks for sharing! Do you mind if I contact you directly to chat more about our injuries? I’m 25 years old and it’s rare to find someone so young with this injury.
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Hey Will, feel free to email me at nickbb10@gmail.com. also look at my response to the comment below.
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Thanks for your story Nick. I used to rock climb a lot. The idea of being dropped by your partner is a tree climbers worst nightmare. I also get that pinching feeling at the front of the ankle. Drives me nuts! I went through three different physical therapists and the third one was actually helpful and had me do exercises that nobody else ever had me do.
You can jog? Lucky! 🙂
Best of luck with your progress and keep us posted! Love to hear these good stories!
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Ha, Jogging is a bit strong, more like walking on the bad side and skipping on the good leg! I cannot emphasize how much MAT has helped, the basic principle is figuring out what muscles aren’t firing properly, then using trigger points and very specific exercises to get them on board and firing again, here’s a link for more info: https://muscleactivation.com/ . I’ve been reading through your posts, and notice you have had great success with braces and the like, I experimented with them and found they helped w/ pain management, but don’t allow me to use the little ROM I have to gain strength and stability, and didn’t make any progress until I started to force myself to walk around barefoot, and slowly building up the amount I could tolerate, now I never use any type of brace or boot, do all my activities in some low profile running shoes. one of my most successful rehab tools has been walking on gravel barefoot, for the first few months after surgery I couldn’t feel my foot at all, so the gravel, while quite painful, has helped me get back fine motor control, sensor feedback, and balance, and now I can walk/hop across river rocks! another thing I found helpful is sliding my bike saddle as far back on the rails as possible, this decreases how much dorisflexion is required when pedaling, and mostly got rid of the pinching in the front of the ankle on long rides.
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I’ll check it out. At this time ROM is my enemy. Locking out my ankle with strong muscles, or tape, or fiberglass is my salvation. Im going for the exo sym as soon as i can. Exosym=running and I can’t believe that could happen.
It’s amazing what getting hurt can do 4 your quality of life. I’m in the best shape of my life. I’m stronger than I’ve ever been. I’m breaking my own personal bests on bike rides. And I’m 41 years old. This injury Has given me an amazing amount of positives. But man it still bums me out when I think about the future. Life seems to always be better when I look at it in the rearview mirror.
I can’t hop, skip, or jump, but i recently rode my hardtail singlespeed MTB for 6 hours with no pain. This blew my mind!!
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Hi just found this forum. I am at 2 years after my PF (motorcycle crash) yes is ain`t easy!! I am doing pretty well now, ride my bicycle walk 5 miles, still stiff in the mornings and i don`t think that will ever go away. Best thing I did after PT was to go to Mexico and sand walk everyday for the winter, also swimming with flippers. So i am now 65. My question is how many have had the hard wear (yes plates and screws) removed, and did it help. I know from time to time i can feel the big plate in my leg.
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Hi Richard! Thanks for contributing! If you don’t get many replies here, i encourage you to ask this same question at the closed group on Facebook called “pilon fractures suck”
We have been corresponding on Facebook because it is a lot easier to go back and forth. Just search that name and click Join.
Is still have my hardware in at 2.5 years. Looking into getting it out soon!
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Hi ya zach it’s Matt again started my physio today so that was really good ankle is tight and sore now that the cage is off I’m starting my first gym session and with the physio try and get some movement in this ankle again long rd ahead but I’m gonna give it the best shot I can and with any luck 6 months time I will b in a better situation but this injury really sucks and really thought when I done it I would have had a better and quicker recovery but not a chance x
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I agree. It sucks ass!
Give it 6 months for sure. And Shop on Amazon for a1 in heel lift insoles. It will reduce the necessary range of motion to walk by a lot.
And if they gave you a good walking boot, I recommend never getting rid of it. When I got the green light to walk I threw mine in the garbage in a victory dance. But then I wish I had it! It would have got me through some bad days.
I’m telling you the heel lifts made all the difference. And I put a whole lot less wear and tear on my ankle. I really believe babying my ankle gave me the best results.
I really don’t think pushing through this injury has any benefit. This is all my opinion and this is all from my own experience. I’m sure everybody’s got a different story than me.
My fingers are crossed for you!
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Hi everyone,
I actually met up with Robert Albert from NYC who also has a pilon fracture in the same right ankle and we shared our stories from the day of our injury to present. I can honestly say meeting someone in person with the same injury has been the most rewarding and positive outcome of this injury. Robert is about one month ahead of me in the recovery process and the fact that he was standing not just on two feet but on his injured foot alone was extremely humbling. I highly recommend making friends with those in your own towns who have similar if not the same injury as you. You’ll never know where it can lead!
UPDATE: I had my 12-week post-op follow up today and my doctor has given me permission to start walking! My wound is healing very well and I have not had a single complication since both my ORIF and internal fixation surgeries. He was very impressed with my ROM and said my bones are healing so well that he can barely see a fracture from the X-rays. I had shared my entire story in my previous post but I’d like to give some advice for anyone who is still recovering from this injury. After my internal fixation procedure, I was placed in a splint for two weeks. After the splint was removed, I was immediately placed in a walking boot instead of a hard cast. Like many others I was shocked but relieved that I was not immobilized in that terrible plaster, but my surgeon said its the new method of recovery where patients are required to start PT at home to regain ROM ASAP. I was only required to put the boot on when I left my bed. When the boot was off, I would do ankle exercises with stretch bands based on YouTube videos. Like many of you I had very limited ROM especially in my big toe, but after a few weeks I was moving a lot better. In terms of hardware removal he said they will stay inside forever as long as they do not bother me. For anyone from the NYC area, my surgeon’s name is Nirmal Tejwani from NYU Langone.
Please listen to your doctors and do not give up on recovery. Feel free to reach out with anyone questions!
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I’ll be 10 years post injury February 2018. My pilon fracture was 2/3/08. I had 18 screws and 3 plates. All hardware was removed (except 1 screw that was stuck) with decent healing (except one piece of my tibia flanges out like a splinter). I have significant pain from arthritis, neuropathy and muscle imbalance. I have found that the structure of the DANSKO shoe with its traditional rocker bottom is the best option for me. (The traditional sole has a 2 1/4inch heel and a 1 1/4inch platform I think. They do offer more sporty or more stylish footwear but only the traditional sole works for me.). It reduces the dorsiflexion and push off required for a normal gait. I also have a spinal stimulator that serves my ankle area. It masks a lot of the pain most of the time. Does anyone know of a doctor or a group that provides a comprehensive evaluation and treatment of the ankle? I know that I need to address the arthritis but I also need intervention with adhesions, muscle shortening and innervation problems.
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Hi Tina!
Thank you for sharing your story. And also for letting us know what has been working for you.
I Googled the top 10 ankle surgeons in the United States and found some very cool websites dedicated to highlighting the best. In my area we have three well-known surgeons. But only one of them is on the national list.
It seems like a really good physical therapist can help you with the adhesions and muscle shortening issues if not the innervation.
Hopefully somebody who knows more than me will reply to your comment!
All the best!
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Curious which list you looked at. I googled the same thing and there are at least 10 different lists with all different doctors. Not sure which one to believe or who decided who got on the list.
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That’s a good question…I don’t recall which list it was, but I think if they made it on any list they’re worth meeting in person if they work near by. 🙂
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There’s one guy listed on most of them- Dr. Thordarson. My other doctor recommended maybe I should try to see him. Been trying to get a second opinion with him, the nearest appointment is 3 months from now. They don’t have a cancellation list. I’m in serious pain and have been for months since many of my screws broke. So just going back to see the my original surgeon. I want this plate out now! I wonder if anyone could get emergency appointment with any of these top specialists when they first get the pilon fracture. Very frustrating.
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I know how you feel. I wanted to see a doctor who was recommended to me and they were booked out 5 months at the time. These specialists are busy busy busy aren’t they?
I’m so sorry that you’re suffering right now. I hope something good happens quick!
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There’s one guy listed on most of them- Dr. Thordarson. My other doctor recommended maybe I should try to see him. Been trying to get a second opinion with him, the nearest appointment is 3 months from now. They don’t have a cancellation list. I’m in serious pain and have been for months since many of my screws broke. So just going back to see the my original surgeon. I want this plate out now! I wonder if anyone could get emergency appointment with any of these top specialists when they first get the pilon fracture. Very frustrating.
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I wanted to share an update as I learned about the ExoSym device through this website.
http://www.hangerclinic.com/bracing-support/adult-le/Pages/Limb-Salvage-ExoSym.aspx
I shattered my tibia and fibia playing hockey. Ended up with 5 plates and 19 screws to hold everything together. I went through the same journey many of you are on – bedrest, getting to put weight on foot after 3 months, walking with cane etc. I was still in significant pain after 6 months. I finally found a physiotherapist who I saw twice a week who helped reduce the scar tissue and gave me exercises that significantly improved my pain and gave me the ability to function somewhat “normally”. I was still not satisfied as I could not walk significant distance, let alone engage in play with my children.
I came across this group and someone had referenced looking into the ExoSym device. I did the research and contacted Ryan at the Hanger clinic. Ryan indicated he could help me. Cutting to the chase I was fitted with the ExoSym device three weeks ago.
I now have no pain – I mean no pain.
At the clinic I was able to start to run and jump in the device. I have a significant amount of training to do over the winter but have a goal to start running in 5km races in the spring.
The Pilot fracture sucks big time! If you have the resources and the willingness to work I cannot more strongly recommend than contacting Ryan at the Hanger clinic in Gig Harbor Washington.
Happy to answer anyone’s questions – rnepean@gmail.com.
Cheers
R.
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Oh man this post makes me giddy!!!
Thanks so much for sharing about the exosym! Keep us posted on future developments when you can!
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Hello PF survivors! I just found this site and broke down crying. I am 1 year post surgery and this is the most devastating thing that has happened to me in my entire 58 years of life. It happens in a flash – I was driving home from work and suddenly a car came from oncoming traffic and hit me head on. The airbags saved my life but my ankle was devastated. In the ER they told me I probably would never walk again but I just couldnt believe that. I was a very active person and now due to pain and stiffness…well, not so much anymore. It’s comforting just knowing others are on the same path. I highly recommend my surgeon Dr J Kent Ellington at OrthoCarolinas in Charlotte NC. He installed 4 plates and god-only-knows how many wires and screws to get me back on my feet – pun totally intended here. He is very talented and very caring. He recommended me for the exosym at the Hangar Clinic here near me but I was thinking it might not work for me. So very happy to read these comments and hear how many folks are using the exosym. I will plan to go back for another look at this. Right now, I am just thankful to know that there are other folks out here who know what it’s like to live with this f***ing hellacious injury.
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Hi Helen! Thank you for sharing your story with us. I can’t imagine the pain you must have gone through in that accident. I did read that airbags have a creepy relationship with this injury. So, you’re alive!!
One thing that never makes sense to me is when doctors say somebody might not walk again… why wouldn’t they just say “you’re not going to walk on that ankle, but you could have a prosthetic installed instead and then go back to walking.”?
All the people who have their legs severed in accidents seemingly have the option of getting a prosthetic, and I’ve seen plenty of people with leg loss below the knee walking around pretty good. Heck there was the Olympian who ran on two prosthetic legs!
I spent a lot of time researching amputation early on, and I know others that have contributed to this blog have said the same thing. I think surgeons know something we don’t.
I have a bunch of questions but don’t feel obliged to answer them all. I know this can be tiresome. What’s your mobility like at 1 year post op? How do you get around? How’s your pain on and off your feet? Do things ache at night? Are you taking a ton of painkillers? Have you seen the ExoSym videos? Is ankle replacement an option?
Thank you again for sharing and good luck with everything! Check back here often if it’s helpful. I love to hair people’s stories! It’s pretty lonely having this injury and nobody around to talk to about it the way that another pilon-person can!
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Hi Zach!
This is such a wonderful blog – I would never wish this injury on any one, even mean bully people, but if you have to go thru this, everyone needs a resource like this blog. Thanks so much for starting it.
So at 1 year out, my days can vary quite a bit. This past week I had some really bad days – every step was painful and i cried a lot (I’ve always been an emotional person so now i have a real reason to cry a lot). Then yesterday, after really feeling sorry for myself, I gave myself a good asskickin’ and got to the gym for a BodyPump workout and then 20 mins on the eliptical. The motion is the lotion! Keep moving and things go smoother. I played 18 holes on a little par 3 golf course today. Now that means that this evening I have my leg up and my ice pack handy while I am watching American Ninja Warrior. I don’t like to take painkillers (yeah, I’m one of those crazy people who really don’t like to take medications and that’s another reason why this injury sucks so bad!). I haven’t taken painkillers on a regular basis since I got out of my cast and into my boot. I hated having to take the oxycodone after my 3 surgeries – I swear I don’t know how people get hooked on that stuff – it makes me feel just plain weird.
I am hoping not to have to have future surgeries – I know cards are not with me on this one but then they also told me there was a 75% chance they would have to amputate my foot. My surgeon has mentioned an ankle fusion but he doesn’t want to do that until it is an only option. He said they tend to wear out quicker then hip and knee replacements. I’m hoping by the time I might have to have one, they will have made some big improvements.
There are a few things I would recommend and you probably already know them. I massage and ice my ankle and calf every night. I still wear my compression sock – especially when I am working (I do IT work and sit a lot during the day -my ankle doesn’t swell too bad but every little thing helps). I do yoga and meditate. both help with flexibility – yoga for body, mediation for mind. Surround yourself with happy people. Drink good beer. Eat real food. Cry when you feel sad. Laugh a lot. 🙂
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Anyone want to try moving comments in this blog to a private facebook group? I called it Pilon Fractures Suck
https://www.facebook.com/groups/126072184709967/
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Hi Helen,
Thanks for your story. Are you sure you can get the Exosym at a Hanger clinic outside of the one in Gig Harbor, Washington? We have signed up for this and are flying out to Seattle in a few weeks for the fitting as it was stayed that’s the only location that does the Exosym as there’s only one person (Ryan the inventor) that can make them.
If it were available in Charlotte or the other Hanger Clinics near us in Atlanta, that would be much easier!
Thanks
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Hi Drew,
You probably know more about it Drew. I went to an appointment at the Hanger clinic here locally. Mike at the clinic evaluated me and we agreed that I had not gone through enough recovery yet. I have another appointment at the clinic for a second look on September 15. I’ll be sure to find out more and will let you know. By then you may already have your exosym. Good luck and safe travels!
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Hi Drew, I just left the hanger clinic here in Mooresville North Carolina. I spoke with Mike Jenks. They can make the device patterned off what Ryan makes. It’s called the fab tech. I think it would be worth your while to call Mike and talk it over with him his number is 704-799-9825. They make it right here in Mooresville which is about 45 minutes north of Charlotte.
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Hi Helen did they mention anything about the cost of that device? It looks very cool!
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Hi Zach – I don’t have the pricing info yet. They made a cast of my leg and will let me try a ‘demo’ model when I go back on October 4. They are filing with my insurance and then will cover the pricing specifics. The ballpark price is $8K-10K. I know that’s a lot of cash. You may want to call Mike. Part of his mission is to make this available to as many people as possible. He might be able to work something out with you. Good luck and I’ll let you know more after my next visit to the Hanger Clinic
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Rode stationary bike for 30 mins today almost 7 miles then did leg presses, extensions, and curls. 13 weeks post op and it didn’t hurt at all! The bike made my ankle feel really good and gave me a great ROM. Highly recommended!
Also in case people didn’t know there’s a Facebook group called ankle fractures and recovery where I’ve met a ton of people with pilon fractures. Just an FYI in case anyone would like to share pictures and meet people.
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Awesome will!!! Thanks for the pointer to the FB page too!
Keep the good news coming!
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11 months now for me. Your so right about life changing. Keep your head up and keep walking. I can get about an hour of being up on my feet before I have to sit down with the foot in the air for about 3 times longer. But I at least get some relief from the couch. Lol. They keep telling me that it will get better in time. Well time doesn’t pay the bills. Just saying. Hood luck.
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Hi Zach its Matt and to each and everyone of you that reads or comments on here today was the first day I’ve walked and I mean by no means it was not proper walking and I still have a couple of weeks left in my boot I said to my self get that other trainer on so I did and was walking around the house and 3 weeks ago I was back in the gym and I could actually feel my calf muscle trying to work and whilst being back in the gym doing 1of the body parts as legs 1day leg extensions next day hamstrings so it’s put my head in a so much better place because previous to my accident I weight trained 5 times a week foot ball and 90 miles mountain biking a week to being in an X-fix for 5 and a half months now been in a boot for 5 weeks but I’ve realised that there is a long way to go but there is a light at the end of that tunnel thanks Zach for being there and for your inspiration to battle this and believe it does get better with time much love to you all xx
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Matt this is awesome news man! Little by little huh? It’s so cool when the little faculties come back, like a simple muscle firing or some numb patch of skin that you didn’t even notice started to go away.
I really believe exercise is the best medicine & exercise at the gym is awesome to be out of the house and around winners! Working out makes the blood pump through every part of our bodies and in my mind I just envision it pumping the junk out, and bringing fresh blood and oxygen into the little nooks and crannies of the busted-up ankle.
Little bit of progress all the time! I was just going through old Facebook pictures and I found me and my wife and my one year old son taking a stroll while I was in a wheelchair. Pretty insane! Now I’m cruising around on two feet )with a tender ankle but by no means as bad as it was a year ago.)
I have no idea how long this is going to last, of course skepticism is natural with me because I hate to be disappointed so I try to already brace myself for bad news.
Im Supposed to be going to The Hanger Clinic for the exosym device October November. When I have good days on my ankle I think I don’t need that device but then I have bad days and I can hardly get around the house and I think man I wish I had that device at least for the bad days to strap on and get moving.
Thanks for keeping us posted Matt! Everybody gets a little bit out everybody else’s story; I believe that in my heart.
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Hi Zach it’s 1am in England at the moment and I thought I’d check the site well sleepless nights are very common since my accident as I’m sure you are used to them lol since X fix has been taken off I get to sleep for about 3 hrs then wake up not comfy then it takes time to get comfy then try and crash again it’s a battle but with time I’m sure it will get better as you said little steps are much better than no steps weekend off and back to gym Monday I really focus on this leg work did you metal work left in your ankle joint to hold it together and is it still there I have had and how long did it take to get sort of full motion back in the ankle joint my worry is is it going to work decently again and I’m sure I’ve heard you say the not knowing is the worst part I don’t care if I can’t run any more just want to b able to walk as I did b4 this accident don’t even care if I still get a bit of pain which I no I will but ya no this is a real hard one isn’t it my shin seems to have healed well anyways thanks for listening my friend speak soon Matt
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Yeah man, the long nights we’re right up there at the top of the worst part of this whole deal. Nothing like being robbed of the opportunity to check out for 8 hours.
Walking should be an absolute guaranteed option at some point… it might require ankle fusion or the exosym brace or perhaps like I got away with for a long time, a regular custom-made afo stiffen and lock out the ankle.
One way or another things are going to get better from where you’re at now… I’m sure there’s no point in saying be patient LOL!
Hang tough!
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Matt – don’t give up – you’re going thru the toughest part of it right now. I remember those nights where you wake up and just cannot go back to sleep. then just as the sun is coming up you doze off.
You will walk again. It won’t be the way you were before but you will and that’s a great thing! Be sure to do all the physical therapy – and try any other therapy that you feel comfortable with and your doctor approves. Do the exercises at home. Make yourself a daily stretch routine and stick to it. Get an ice pack (I got a Colepak on Amazon) and use it every night. Massage your ankle and calf first, then put the cold pack on for 10 mins. You will get there! Sometimes it will suck and you will cry and be pissed off and unhappy. let yourself go through all those emotions. it’s a very important part of the healing process- even for guys. 🙂
And just in case you have any doubts, I am 1 year out and I went to the gym yesterday and did a BodyPump class. then today I played golf on a par 3 course. oh and I’m 58 years young
and I’m English too – from Harrogate
You can do this, and you will!!
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Thankyou Zach and Helen yes I’ve come very far in only 7 months but as you both no with this injury when you try to tell ppl how much pain you are in because all the pain is inside you can’t fully express it to them I’ve even had comments frm other ppl friend or family like and don’t get me wrong I’m more than happy I survived my accident but they say at least you did not did and yes that’s correct but the pain I’m going through right now is a living hell and the trauma my head and body has gone through is horrid I posted last at 1am it’s now 6am and posting again your correct Zach pilon fractures do suck but I will try my very hardest to smash this shit out of the way and try to rebuild my life and when I get my insurance money and buy a house and nice things I can look back at this as the most testing part of my life but I came out the other side thanks for listening you guys thanks for this site Zach your a legend xxxx
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Anyone want to try moving comments in this blog to a private facebook group? I called it Pilon Fractures Suck
https://www.facebook.com/groups/126072184709967/
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Anyone want to try moving comments in this blog to a private facebook group? I called it Pilon Fractures Suck
https://www.facebook.com/groups/126072184709967/
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Never heard my circumstances before so here goes…I took my dog to a local dog park, was talking to someone, turned away to check on my dog and was hit from behind by 5 large dogs, flew through the air, landed on rt leg which was by then under me, bone came through skin about 3 inches. Had emergency surgery, spent a week in critical care unit of local hospital trauma unit then to 2 weeks as in-patient at a rehab, PT, 3 x a day…discharged home with daily home visits of PT for 9 weeks. I’m in my 6th mo. of recovery, walking with cane but very unstable without it. Foot somewhat swollen, can’t get a reg. shoe on. Thankful I’m home and just got OK to drive…I have a plate and screws over ankle and a plate from knee to ankle with 19 screws. Painful at night and after doing “too much” during the day.
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Thanks zach
I was injured 2 weeks ago falling from a small height my leg is in so much pain but strangely when it happened it felt like a sprain rather than a break… when told it was a pilon fracture I didn’t really think to much until the surgeon explained the severity of the break anyway I want to thank you for this blog as I now know I have a long road to recovery and want to wish anyone with this injury a speedy recovery.
Many thanks
Allan
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Hi Allen, I hate to say “welcome to the club”. It breaks my heart to meet recent recipients of this malady. But if you read every single posting on here in your down time I think you’ll find a common thread; which is that we all find away to keep our lives going, and even keep our lives interesting as time goes on. It just takes soul-searching and it takes sharing and commiserating and even feeling sorry for ourselves because frankly we have something to feel sorry about. But I really believe for me after enough of that sorrow I started to find a new kind of hope in a new kind of way.
And through this blog I learned about the exosym brace and I learned about the benefits of ankle fusion and I learned about the Instagram page about this injury.
I’m really thinking about starting a private Facebook group so we can all post back and forth in and easier Forum then the comments section of this blog.
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Anyone want to try moving comments in this blog to a private facebook group?
https://www.facebook.com/groups/126072184709967/
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Hi my name is David, I am very early in the healing of my injury as I am only 11 days after surgery. I am already discouraged and can’t stand this cast, can’t wait until it’s gone. Anyway, my injury I received in a motorcycle accident, I am a very good rider and am always aware of everything going on around me. I ride like anyone on 4 wheels is out to kill me. So I’m coming up on an intersection and looking ahead I see a woman at a stop sign, watched this woman look in my direction, looked in the other direction and still….still, pulled out. Now I’m looking for am escape route, no chance, it was either broadside her or cross into oncoming traffic. I chose the broadside. My foot was almost completely severed from my body. Ankle just exploded. Not happy. Was in surgery approximately 4 hours after the accident. And after 4 hours of surgery. Not really sure what’s in there but looking at x-rays, few plates and quite a few screws. I’m being told non weight bearing for 3 months, and physical therapy for a couple months after that. This depresses me, too many unknowns, being out of work for so long. Just not a happy fucking guy right now
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Hi David,
I’m about three months post surgery but when I was 11 days post op I can tell you I wasn’t the happiest guy on earth either. I’m sorry you had to experience something so tragic but this injury will teach you a lot about yourself and you will see life in such a different light. I was also NWB for 12 weeks and trust me the hardest moments are in the first few weeks of recovery. I used to think how can this happen to me but I have read stories of people losing their limbs or even becoming paralyzed due to car accidents and it makes me realize it could have been so much worse. Each day of being alive on earth is a blessing and you’re so blessed to have escaped death. It does get better I can promise you that – it will just be a long recovery from here on but one day as many of us here have done so you will get back on your feet. If you have Facebook there is also a group called broken ankles and recovery where many others have had similar injuries that can share their stories with you. Best of luck from here and feel free to reach out if you have any questions.
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Hi David. I’m having a hard time sleeping and so i checked my phone and saw your comment.
I feel for you. I can imagine the pain. And i can imagine the horrible feeling of inevitably that occurred just before impact. I have an instant reply button in my head and the little monkey that lives up there loves to push that button all the time.
Therapy/counseling helped me a lot. I had to find a way to make the moments bearable and i got some good help.
Also, As soon as i was allowed to crutch around, i got my wife and friends to drive me around and get milk shakes. Which was good therapy too.
I found that life was most bearable when i had good distraction. Lots of diversions like tv and music and YouTube videos helped me kill the hours. This injury is all about the hours. We need to be expert hour killers.
I try not to think too far ahead, especially when the mind wants to find bad news. I try to only think about good things. It’s easier said than done…
You’re not alone. There are a few other people around here that can relate to your situation. I hope you find a way to get “ok” with what happened. I’m thinking that won’t be easy. But I believe it is possible.
Keep us posted and good luck!
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Hi Everyone,
I have now been put in a boot and I am slowly managing to commute to my work.
Its been now 7 weeks post op after my ankle fusion. I was just glad that there was no complications and my cast was removed and transferred to a boot. I am still on very light partial weight bearing so I am not sure how my gait movement would feel after I actually start walking.
There are days when I look at my ankle and feel depressed because there is no more movement after fusion . But I also feel happy that there is no pain. After been confined at home for so long that I started chatting online . Like most of you even me I struggle to sleep at night. But its been nice I joined a Buddhist chat group . I talked with a really really young guy 23 years who is born with physical challenges and both his limbs are deformed yet he is so positive and drives around. I also talked with someone in the same group who is an army veteran and is a double amputee and burn survivor too, he says kids call me a badass because of my artificial limbs. It is inspiring to talk with such people, makes me feel very humble that life could have been worse. They would like any day to trade my situation with their’s.
I also feel sad when I read equipment’s like exosym I wont get this here in India. Now with fusion there isn’t a chance even to opt. But I am also happy for those of you in the forum who has a chance to know how it would feel to run again. I hope you are able to get the exosym and get a better quality of life again, all the best !!
But I am hopeful I might get to start walking without the crutches if all goes well in a month’s time. So, far the progress is good and I am healing faster compared to my first surgery. I always doubted did my first surgery go wrong? But doctors couldn’t directly comment though they did mention that they would have preferred to place the fixtures and screws differently so that my leg was in a 90-degree position. First surgery almost left mY leg deformed. Sometimes it is better not to know because it will only add to my frustration and anger. All I know is that I had lost a lot of cartilage in the fall and fusion was the best way out. Also with the second surgery the deformity I had has been corrected and my foot is now placed back in 90 degree position.
Zack, I could never thank you enough for creating such a wonderful forum. In Buddhist practice we say that “We create the causes and conditions of our life” . You have truly have created good conditions by initiating this blog . So, God bless you and your family !
Also thanks for creating the Facebook page,
I have never had a Facebook page in my life lol
I aint such social media savvy and very reclusive person .But I am going to create an account to join this group you created in Facebook. Although, I had found an ankle fusion group in Facebook, I couldn’t bear to read the messages there so many surgeries going wrong and fusion not happening . I already had enough having had two surgeries and not been able to walk for almost 9 months now. So I did rather join the pilon fracture group. I just want to stay away from negativity it gives me more stressful thoughts.
Is there anyone else in this forum who has done Ankle fusion? Do share your experience if you have. It feels better when you know someone out there is struggling a similar experience.
Although, like how someone commented I wouldn’t ever wish this injury even to my worst enemy, I second that opinion .My heart goes out to everyone of you struggling through this injury. I also feel so good to read the experience of some of you who have had tremendously good recovery.
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Iaisram this is such a big, heavy experience you have gone through. I love that you’re talking about staying away from the negativity. That’s what I’m all about too.
From everything ive heard, you won’t likely soend a lot of time regretting the ankle fusion. Also, did the exosym page state that fused ankles were not suitable for the device? Im going to check into that.
Regardless, my uncle says he almost never thinks about his fused ankle anymore. He plays basketball on it several times a week, and a lot of golf.
I look forward to seeing you join in the fun on the Facebook page!
Best wishes!
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Hi Zach and all you others who use this amazing place for us lot to come to or look at in some of our let’s call it that ground hog black hole days it’s nearly midnight in England and I’m trying to get comfy and crash but isn’t think it was going to happen so here I am getting a little bit more movement in my ankle but here is a question for you Zach when you where still in your boot and sort of going through the transistion period did you get knee and groin pain I am coz of being in the X-fix for 6 months and having ankle fixed I think the diff in height of cage and foot plate and good leg trainer has caused it I must get the strap sole on trainer that would prob help but at least I’ve been back in gym for about 5 weeks now and can see a massive diff back in upper body I’ve put a stone of muscle back on which is a big booster what an amazing thing muscle memory is and I’ve noticed bad leg calf and thigh muscle on bad leg is slowly coming back and it’s funny coz it’s wasted away and regrowing it’s bloody sore lol so I can’t complain big love Zach and to all the rest off you gonna try checkin out for a few hrs xxxx😜😜😜😜🙂🙂🙂🙂🙂😜😜😜😜
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Hey Matthew glad to hear that you’re starting to get ripped again!
I did not have the pain you’re speaking of. But I feel like I’m familiar with that pain now days. Perhaps it could be related to the hard work you’ve been putting in with your exercises.
There’s all kinds of muscle imbalances that could be pulling things the wrong way. Pain in the groin would make me think hip flexor muscles like the psoas. Pain in the knee would make me think some sort of quadricep tightness.
Everything connects together from the knees to the abdomen so perhaps getting some physical therapy on the hip flexors and quadriceps will help.
I know that’s a sore spot for me just from so much bicycling.
Get some sleep! Haha!
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Get some sleep Zach haha jokes that is easier said than done as you no but I did eventually 330-7am then wake get boys off to school then probs went back for couple hrs but that’s the norm gonna get on an exercise bike in the gym see if that may b loosen leg and hip up a bit it’s worth a try will try anything tbh as I said yesterday there is a big diff in thigh muscle as being back gym for a month just slow going as is everything with this injury but we soldier on and just hope for the best hydrotherapy for me Tomoz can’t wait for that it’s good to walk In the water knowing if you fall it won’t hurt lol will post again soon speak soon Zach and all the rest xx
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I have seen all the information videos from Exosym.
There are very happy users with ankle fusion.
Let Hanger clinic be who tells you if you are or not a candidate.
Good luck!
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Thanks for that perspective Daniel. I think that is great advice.
If you have a chance you might share some of your experience in and perspective at the Pilon fractures suck private Facebook group we’ve got going too!
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Hi! So interesting to read everyone’s stories. My name is sue and my life tragically changed on May 22, 2017 when a car went through a stop sign and hit me. My tibia and fibula were snapped at the bottom and fractured at the top. My ankle was shattered into fragments. I had sugery the following day habing 1 plate put in and an external fixator. June 14 i had my second surgery with another plate and some more screws. Two week’s ago, 4 months after the accident, I was cleared to start weight bearing and begin PT. I truly thought once I could bare weight things would progress quickly…not so much. The swelling in my foot and ankle are incredible. I struggle to find anything to put on my foot that will fit. My ROM is very minimal. I coach high school sports and had to give up coaching volleyball this season but was hoping to make it back fro softball season in March. I’m wondering if this is possible or not….the school will not let me return until I have no limitations or restrictions. It’s amazing how one day I feel optimistic and the next I want to throw my crutches and scream. I look forward to the day of walking without them or with any other assistance!
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This is a sweet place for sharing our stories. I recently (7/8/17) fell from the roof of a building. I fell 15ft, and landed on on concrete sidewalk. Both my ankles broke in the impact. My left ankle was less severe with only two fairly clean breaks, but my right ankle shattered and blew out the right ride of my leg splitting open the skin. Both ankles were pilon fractures. The left side was neatly, set, then casted. It’s doing pretty well now. My right side had two separate surgeries, 35 pieces of hardware, and is currently playing the waiting game to see how or if the missing bone grows back. I m looking at a possible bone graph to fix my right side. But it’s now 9/30/17, and I m out of my wheelchair, wearing a boot on only my right ankle, and crutching around like a champ. It feels good to be able to get out of the house. I even started driving my Manual vehicle again. I need to take my book off, and put on my “driving slipper,” but it’s doable. And because of my regained ability to drive, I have returned to work this past week after being unpaid for 2.5 months. 🙂
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Wow Dan!
You seemingly come across upbeat despite the horrible situation you’ve been enduring!
You know, I cried a little on the first drive I took alone. It was so so sweet to be that free.
I definitely recommend you start checking out the exosym ankle brace. So far it’s the pot of gold at the end of the rainbow. Are you can YouTube it and get the full Lowdown and also check out exosymplyamazing on Instagram and there’s a Blog by the same title. And check out our Facebook group “Pilon fractures suck”. If you hit the invite button on that Facebook group, I’ll let you in.
A lot of the day-to-day conversation is happening over there now because Facebook is a lot better place to type, share, and get responses Etc.
Thank you so much for contributing your story Dan. You’re fulfilling my dream man! (My dream became having other people to talk to about broken tibial plafonds with after I laid around for a long time with nobody who understood anything about it….I got a little lonely LOL)
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Hello all I went through a right ankle pillon fracture DEC. 20 2015 I fell 23 feet helping my neibors build a house. We were setting trusses and I slipped as I was getting ready to cat h the next truss. Could have been worse. I am 44 now and my 16 yr old son was there helping us….he saw it all and I just remember hitingthe ground and yelling to everyone I was OK… I still remember my son running to me in tears thinking the worst…I did have a compound fracture and severed a artery…luckily it was pinched and I did not lose much blood. We live in the country and the ambulance could not make it. I was loaded in our suburban and driven to the ambulance I live in Spokane Washington and the roads were too icy for the ambulance.
1st surgery and external fixator that day.. Sent me home the day b4 Christmas and then back Jan. 4 for the main bone surgery..3 plates and bout 15 screws. They did have to remove another plate from a previous break in my 20s
I. Could not have made it through this without my amazing wife who stayed by.m Y side the entire time. Itisa slow painfull painfull process. I would love to share more but don’t want to go on and on…..it is coming up on 2 yes I am on pain meds but can do most things….walking only I still need crutches at times in the morning to make it to the shower. I have never wanted a fusion but I am extreme!yinterested in the exosym.everyone keep your heads up take one day at a time and remember it could have been worse and we r still here
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Hi everyone. My story begins on march 31 of 2 years ago. We had just moved and my sis wanted a soda so at 1030 at night i went to gas station for a soda.. On way home i was trying to slow down for a curve… Hmm right food on break breaks didnt work.. I hit a georgia/florida pine going 30mph. Wound up with a decimated ankle and very close to a compound pilon fracture. My tib and fib were close to breaking skin. I was rushed to shands/uf trauma 1.. I had a orif put in for 2 weeks till blisters healed and swelling went down. Then went back for 3 plates 22 screws and donor ankle bone. I was non weight bearing for 6 months.. Started walking painful but i handled it. Now 2 years later i cant flex ankle.. I work for a sattelite company so im up and down ladders and kneeling. I am in so much pain every day.. Today was the worst i couldnt flex it or rotate it with extreme agony. Ibuprofen doesnt help. I will be going to my office meeting then to er tomorrow because pain is so bad..
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Hello,
I have a Pilon fracture from 10/2015. I had 5 surgeries including a bone grafting from my hip. They had to trim my fibula, so my injured side’s leg and foot is shorter than my good side. I still have some of my hardware in and am having trouble running and jogging ( it looks like I have a limp/hobble trying to run) wondering if anyone has had some issue or have any advice.
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On January 28, 2016 I was in a car accident. I broke and dislocated my right ankle and had a Pilon Fracture in my left ankle. I had 5 surgeries with in a months time betweenthe 2 ankles I have 2 plates and 12 screws in my left ankle. When I had my last surgery in February if 2016 I was told that I would probably have to have it fused. I was in a hospital bed in my living room for 9 months befor I could do any weight bearing and was in a wheelchair. 2 years this month and I still deal with the pain, I ended up having neuropathy in my left ankle due to the surgeon stopping the blood flow too long while operating the last time. I am now getting steroid shots in order to walk without as much pain. I’m now in a brace indefinitely on both ankles. I didn’t realize how much pain I have in my right ankle due to the over whelming pain in my left one. I’ve been told that I need to have my left ankle fused I have not decided whether I want to go through it I don’t want to live with this pain the rest of my life but I don’t want to loose most of my movement either. I didn’t realize that others are suffering from this same problem as I am and it sucks some days are good and some days the pain is unbearable. I take tramadol and loritabs for pain along with gabapentine for my neuropathy.
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Hi November 7th 2016 I was in a motor vehicle accident. My fibula broke my tibia fractured and my ankle crushed (right leg). I have had 4 surgeries. First broken bones ever. I now have one rod two plates and four screws in there. I have been doing physical therapy twice a week since May 19th 2017.
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I suffered a Pilon fracture in September 2017 after a fall at a roller-skating rink (I can skate but some little kid came out in front of me and tripped me). I broke the fibula as well as the Pilon fracture and am now walking and full weight bearing with the help of orthotic shoes – have just returned to work full time (desk job). My surgeon is considering removing my plate and screws 1 year post injury as I have limited ankle mobility and I’m happy to have it done. Has anyone else had their plate and screws removed? Surgeon has said it will only require an overnight hospital stay (unlike the previous 17 days) but I’m concerned about how long I’ll be out of action after surgery and what recovery time will I need? Would love some stories if anyone has some to share…
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My daughter was a passenger in one car vechile accident on October 7 2017 and she had a pilon fracture. Doctor advise she shadder the bones and pushed them up. She had surgery and he put metal in her foot. We have been dealing with this now over 6 months and she still can’t walk right. So as of today April 17 2018 the doctor is taking hard wear out hoping that this will help.
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I received mine october 2015. I’ve had 5 surgeries on mine and because of cartilage damaged I’m now going to need either a full ankle replacement or bone fusion. Anyone done these yet? Any suggestions?
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Hi, I had my accident on January 28,2016, I dislocated and broke my right ankle. I had a pillon fracture in my left ankle I have had 5 surgeries on both ankles right after my accident within a 2 week period. On my last surgery I was told that I would probably end up getting my left ankle fused. I have had my limit of cortisone shots and I have lived with constant pain since the accident. I even ended up with neuropathy due to the blood flow cut off so long during my last surgery. I am due for surgery Mat 4th to have myvankle fused I was told that they would do a bone graph from below my knee and non weight bearing for 8 to 12 weeks. The time frame doesn’t bother me that much being that I spent 9 months in a hospital bed in my living room. What scares me is going through all the after surgery pain and learning how to walk with not much movement. I just hope this eventually eliminates the pain.
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My name is Mike,
I fell off of a roof 7 months ago which resulted in dual Pilon fractures. I have Two plates and around 12 screws in each leg and am still in a wheelchair. I stood for the first time about 2 weeks ago and took some baby steps while using parallel bars at PT. I am having lots of trouble with stiffness in my toes. I was very curious to see if anyone else has experienced the same.
If anyone has any advice to give or questions for me please email me: mikenewburn@gmail.com.
Thanks and best wishes to everyone and their recovery.
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I have a pilon fracture I all ready have been in cirurgy, I’m a all mountain biker, my cultivo consists in rebuilding mi bone with a part of my Iliac bone.
Does anybody have a kind of cirurgy like this one?
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No, but I had a pillon fracture in 2016 I had 4 surgeries at the time of my car accident I actually had the pillion fracture in my left ankle and broke and dislocated my right ankle. After having 4 surgeries within a week and a half an spending a little over a month in the hospital they told my I would probably have to have the fusion done. I had it done with out much pain and a bone graph. They also scraped all the arthritis off the bones so I’m hoping this will take care of the pain I had
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Thanks Lisa I pray every day, in hope that I will have health for living, this is a very hard way I’m 39 years old. I’ll pray for your recovery also…god bless us.
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It’s a very painful thing to go through as I have differed for over 2 years and ended up with neuropathy in my left leg and ankle due to the turnique being left on my leg so long during surgery. I just had my fusion so I hope this eliminates the majority of the pain. I also have 3 bulging disc in my neck and a pinched nerve which has effected my arm and hand I also have 4 bulging disc in my lower back along with finding out in October I have kidney cancer my doctors have told me that I’ll never be able to work again and I have not worked since my accident but disability says I can be re trained to do another job st 50 years old Take care and I hope you get some relief from your pain, it’s a hard road to recovery I’ll be praying for you and everyone else who is going through what you and I are
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Tanks Lisa, our live in earth is a passage to heaven, god bless us…best of luck and peace of mind to you, your testimony was impressive to me.
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Hello everybody:
I have a fracture that smashed al my cartilage, I will have a painful walk, my question is how many years until a fusion of ankle, does the pain be controlled with painkillers…I have done the operation last week…I need your feedback.
Luis Rodrigues
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I’m going through the same thing. My trauma surgeon just sent me last week to an ankle specialist to decide if an ankle replacement or fusion is better. It’s been 2 1/2 years since my accident. I got to the point it was painful to walk every day and my ankle would go out when walking, especially in the winter and that’s when they suggested it. I only take Motrin that helps some.
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Thanks a lot Alyse! God bless you.
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I have this feature too. Yes it sucks… I would like to tell my story…
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Hi Mary how are you now?
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Hi everyone
last May I suffered a fall in height on stones, and I unfastened my right ankle.
I was hospitalized and I spent 14 days with the loose foot waiting for good quality soft tissue to advance to operation.
The operation took 4 hours consisting of ORIF with osteosynthesis used – autologous implant of my Iliac.
I spent another 15 days in the hospital so as to ensure good healing of the sutures (I took injectable antibiotics every day) after 3 days my doctor had to move the foot in order to gain movement as fast as possible … I found it strange but now I find one excelent idea…
When I got home I started to bike 15 min 2 times a day, while I was doing my strength, the pain disappeared, my foot was mobilizing and the splint was cracking, after a month, everything was ok.
Next step climb the training to stints of 30 minutes on the bike, after another month, was removed the splint and start to load load, at this moment I feel I lost a little dorsiflexao but nothing serious, I do 20 km on the roller bike , and 10 km a day with the help of crutches, but I can walk without them and without limping, only 3 months have passed !!I have now 350km on my indoor roller bike… I miss my mountain bike…
I think I will get in 6 months everything thanks my doctor who did an excellent job, when I see your stories I thank God for my country to have a free and fantastic health service … courage for all we go forward …
I will send you news
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Hello guys
Walking without help… Feels great…
Past 4 months after surgery… It’s very painfull walk the first half an hour in the day, but if I don’t stop it’s quite aceptable.. I understand now the general feeling of everyone with this issue… It really sucks…. I was thinking 🤔 how many long can we use a exosym device, it’s not a lifetime device right?
It’s necessary to strength the muscles of our legs does anybody uses electro therapy?
Thanks
Luis Rodrigues
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I had a pilon fracture feb 18 2018. Dirtbike accident. It’s been 8 months I can walk with lots of pain. I was a very active person playing basketball and riding dirtbikes. It sucks I don’t hear any success stories about people running after this injury if anyone has any information to help me that would be great! I do therapy and go to gym daily I’m 46 yr old which works against me already! Just want my life back
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Hi Jason
It really sucks, this is a very bad injury, I have returned to work last week I walk about 7 km a day and sometimes it really hurts, i m glad to have my foot and not be amputated, the future will be painfull that’s the only thing we all know.
Jason the end line for our injury and age is the ankle fusion, but we must hold the maximum time, we will never run… That’s life… I’m curious about exosym, but in my country it does not exist…
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Hi guys my name is Dave and I recently suffered a pilon fracture and am 4 days post op from my 2nd surgery. I just came home today and I am having a very difficult time with both pain management and facing the facts of what the recovery time is looking like. Please comment with any advice for me or share your story to let me know when it actually will start to feel better…it’s just hard to have a positive outlook on things right now.
Thanks
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I’m 10 months in! I broke my leg from a dirtbike crash went off a jump and jammed my foot in the ground! 3 plates 20 screws later it was back together! I’m walkjng but with lots of pain! I do pt plus work out at gym almost every day! It’s getting better but very slow I was a athlete and played b-ball and road motorcycles I am hoping I can at least walk without pain someday but most stories are not good, I hope I’m an exception!!
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Hey Dave, sorry about your injury.It is a tough one and it will unfortunately remain with you for the rest of your life..Plan for long term recovery. You will get stronger as time goes by..It is a slow process. You will need to rethink normal as the injury will never leave you. You will ride again,however you will be mindful of the leg..Ankle joint stiffness and possible soft tissue pain above the ankle joint may also be in store for you down the road..Gotta remain positive and carry the weight ..,,Never give up, ever!
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Stick with it hard work!!
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Hi
Wow, I feel quite lucky.
I had a pilon fracture (with broken fibula) December 2018 when the tip of my left ski got stuck on a frozen ice ball & tipped up vertically. The binding for whatever reason did not release, so after the rest of my body pivoted round the stuck ski came free with force & eventually my boot released from it.
I had external fixation rods inserted in France (wished I had paid more attention at school) as no one spoke English.
On return to UK – lucky to get an amazing surgeon. Put on hospital bed rest for 7days until swelling reduced.
January 11th had plate to hold tibia together and one that goes across inside ankle bone. The outer side of the ankle was the most damaged but was not plated due to trauma and soft bones and then put in a cast.Told walk daily as far as can – till it hurts. Hurts anyway because the plate over my ankle bone sticks out & rubs against the cast. 20th February 2019 had the cast off and was given a walking boot. Nice to be able to have a bath but my left leg looked alien to me and was still very swollen.
I could move my toes but have numbness in whole of foot, underneath and on top. I am told that the nerves are intact. Plate over ankle still hurts but cannot be taken out until the summer.
10th March because crutches were in the way when picking up daily food I tried without.
And then did my long walks without crutches. And round house tried walking without the boot on – so painfully slow as it wanted to slap the ground like a wet kipper. I had to mentally think how that foot should walk
20th March my surgeon very pleased although I am 65 he says I am healing well even if I was 21 !! Apparently it helps because I am slim. My fibula is fully healed, and the crazy paving base of tibia is healing well.
I am at the next stage – walking (trying) in a trainer – had to get a size bigger to accommodate the swelling. It’s hard work and my left foot does not walk properly YET. Once I can drive I am going to a lady who does scar tissue work – hopefully to regain as much mobility as possible.
But reading everyone else’s experiences I feel so lucky.
Jane
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I get my hardware out tomorrow and a rod installed!
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GOOD Luck.
I have my accident last may, keep very well with a normal, sometimes painful life, but I’m very happy for now, one day each day. Keep mind strong.
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Wow looking from the comments some you had it quite bad. I broke my fibula and did my tibia in on 25 Feb 2020. My surgery was that night where I had my fibula screwed and plated and two rods as an ex fix installed. I had that for a week before getting it removed and another plate and screws in my tibia. I was in a fiberglass splint for a week before getting my boot. I was out and about 1 week post-op and returned to school.
i injured it doing a jump on my dirt bike where I came up short on the landing. I felt my boot expand on impact and searing pain immediately. For a first time broken bone, this seems like a pretty serious injury and I am unsure if I will ever ride again.
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Hi! Thanks for stopping by. We created a Facebook group that’s a lot more active than this website. For the last four years we’ve been growing to maybe 900 people with the same injury.
If you’re on Facebook go there and type in “pilon fractures suck”
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